Sexual Dysfunction in MS

Strong stuff for the first substantive blog, don’t you think? Well, it could have been worse – I was going to write a piece about assisted suicide as Jack Kevorkian had just died and Terry Pratchett had just made a documentary on the subject. Then a friend rather wisely pointed out that the topic might be a little gloomy for a first go. So I’m switching to sexual dysfunction because that’s what’s eating me up just now.

Warning: I’ll try to deal with this subject as sensitively as I can but inevitably there will be some details that are pushing at the envelope.

Let’s begin with a joke – surely erectile dysfunction must be a shoo-in as a subject of humour. Laughs about this aren’t going to be HARD to think UP especially with Google there to help. Well, no. It turns out that the majority of gags are about Viagra and not funny. A bit like sexual dysfunction really. Not funny.

Most symptoms of MS are not funny but, if need be, you can bend them, or more particularly people’s attitude to them, for a laugh. That’s more difficult with sexual dysfunction. If my partner finds my failings in bed difficult to deal with, that’s so not funny. Humiliating more like.

It’s like acne erupting at puberty when you really need to look your best, proving that there either is a god or there isn’t, depending on how you construct your arguments. How can life be so mean unless there is an intelligent power pulling the strings? The unhappy coincidence of sexual dysfunction is that the nerves serving the genitals exit the spine very nearly at the bottom of the back. That’s below the place where the nerves serving the legs come out. In fact, it’s below everything except the bladder and the back passage. What this means is that sexual function is amongst the first things to go wrong when MS becomes progressive. Many people with MS who have permanent damage to their ability to walk also have sexual issues. I can’t speak for everyone here but, for me, that is a cruel twist of fate indeed.

Clearly, there is a broad division in sexual dysfunction – male difficulties and female ones. The problems each gender face are quite different to the other’s. So here’s an invitation: should a woman like to write a piece about female sexual dysfunction in multiple sclerosis and send it to me, I’d be more than happy to publish it here provided it’s of sufficient quality. Email me before writing it though. Me, other hand, I’ve only got experience of the male side of the equation, which can be broadly summarised as erectile and orgasm dysfunction.

So let’s start with the bad news: erectile dysfunction is a very common symptom of MS and is distressing both to the affected individual and his partner. It can manifest itself as an inability to achieve an erection or as a failure to sustain one for very long. The cause can be psychological – depression, for example, is a common trigger – or it can result from a variety of physical causes including the sort of neurological damage associated with multiple sclerosis.

There’s something deeply humiliating about serving up a limp member to a lover. And not just for the owner either: being perceived of as sexy is an important ingredient for many women – it is part of the complex equation of being turned on. The best way to show your appreciation is to stand to attention when the moment arises. If you can’t do that, she might not be able to stop feeling a little rejected even when she knows it’s caused by MS and is not about her. Even when things function a bit, a negative feedback loop can sabotage the delicate balance. Worrying about whether things are going to work properly makes them not work properly. Of all the things in the universe, it’s only your own penis challenging your masculinity. Oh the irony!

So here’s the scenario: two beautiful people lying in the conjugal bed, the air redolent with exotic oils and pheromones, yellow candlelight painting shadows over their lovely forms. The mood should be steamy but it’s not – it’s flat and depressed. One side feels inadequate and humiliated and the other rejected and unattractive. Besides penetration is out of the question without working equipment.

Time for the good news!

There are a lot of treatments for erectile dysfunction and many of these really do work. This is a very manageable condition and the first, best treatment is a loving, understanding partner you love right back. If, between you, you can interpret this problem as a shared one, everything is going to work better. Once you’re on the treatment trajectory, trying out and evaluating the different potions can be a lot of fun for you both. If one concoction stops working or has unpleasant side-effects, you can easily switch to another. But exercise caution. It’s easy to get carried away and munch more pills than you should. You also have to beware of mixing treatments, including some for other conditions – basically don’t do it unless your doctor says so. Bizarrely, it’s dangerous to mix grapefruit juice with many medications, including some of those for erectile dysfunction.

At the same time as you consult doctors to find the best treatment for you, remember these top tips:

1. Alcohol kills erections. Try to drink no more that one glass (and preferably less) on nights you think you might get lucky.

2. Smoking kills erections. If you can do it, quit. I stopped over two years ago and it did wonders for me on so many levels.

3. A lot of men have their best, most dependable erections in the morning – if you can, use them.

4. Change the emphasis of sex away from your pleasure to hers – this can be just as satisfying, perhaps more so.

When I first went to the urologist and explained all the negative psychological feedback loops I was experiencing, she said, forget all of that and try this pill. She was right. All those complex thought patterns evaporated to be replaced by a handsome erection. I don’t want to reveal which of the drugs that was except to say that it’s not the one I’m using now.

There are several types of drug for erectile dysfunction. The most well-known these days are the PDE-5 inhibitors – sildenafil (Viagra), tadalafil (Cialis) and vardenafil (Levitra). All three work by blocking the action of an enzyme that lines the smooth muscle in the blood vessels that supply the penis. I don’t want to get into comparing these treatments. They each have different side-effect profiles and half-lives (the time the drugs stays active in the body) and it is up to the user and his partner to evaluate the drugs for themselves.

Another group of medications for ED are the vasodilators. These work by dilating the blood vessels but only work locally. That means that you either have to inject the drugs into the penis, something many men find difficult, or insert a suppository into the urethra. The injectible drugs are Prostaglandin E1 (known pharmaceutically as Alprostadil), Papaverine and Phentolamine. Alprostadil is available as a suppository, sold under the brand name MUSE. These drugs must only be used when prescribed by a doctor. Permanent damage to the penis can result if they are not administered in the approved manner.

Another ED drug is apomorphine sold under several brand names including Ixense and Uprima. It is what is known as is a non-selective dopamine agonist and works on areas of the brain rather than the penis. In a large trial in the UK, only 15% of subjects chose to continue using the drug after two months. As a result it was discontinued as a recommended treatment for erectile dysfunction. I did manage to try this drug prior to 2006 and I can’t remember it not working. However, that was over five years ago and, for some forgotten reason, I didn’t elect to continue using it.

One of the potential pitfalls of getting ED medications wrong is priapism. This is an erection that doesn’t go away. Although that might sound fun, especially to those who struggle with ED, it’s actually very painful and considered to be a medical emergency that can have very nasty consequences which I don’t intend to dwell on here. If you have an erection that doesn’t go away after four hours, consult a doctor immediately, preferably in a hospital environment.

Less pharmacologically invasive, are the vacuum devices. There are several of these approved by the FDA and they work by reducing the pressure around the penis thus allowing more blood to flow in. The blood is then trapped in with a ring and the whole contraption removed. The ring must be taken off after 30 minutes otherwise harm may result. It is important to receive medical guidance before using such devices as serious damage can be done to the penis by using cheap appliances incorrectly. Too much suction can burst blood vessels. For the same reason, never ever use a vacuum cleaner as a substitute! Some couples find vacuum pumps unsatisfactory and inconvenient – apart from anything else, the penis can get cold without a running blood supply. On the other hand, a small study in London found a small but significant increase in penis length as an accidental by-product of using a vacuum pump.

And when all else fails, there is always surgery. This is usually the last resort and, even then, only tends to be needed for men who have resistant psychogenic impotence (caused by psychological and not physical factors). There are a variety of prosthetics available ranging from simple permanently erect implants to hydraulic devices that can be pumped up or deflated by pressing a button located out of sight behind the testes. Generally, inserting a prosthetic destroys one’s natural ability to achieve erection and is usually accompanied by a slight reduction in erect penis length. That said, failure rates with penile surgery are very low, devices tend to be very discreet, the erections never fail and studies show a high level of patient satisfaction.

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